We are quite frustrated and maybe just do not understand but has anyone else been advised from your neurosurgeons and/or neurologist the excessive head pain is NOT from the cavernous malformation and that CCMs don't typically cause head pain. We find this very difficult to understand or even agree with and with debilitating relentless head pain without much help from any prescriptions. Is this common and are any of you dealing with this? If so, are there RX that have helped?

I'm sorry you are having this problem, but no, you are not alone. Unfortunately, many people are told that the CM isn't causing their symptoms, even though no other explanation is given. Headaches and vision changes are frequent symptoms. It is possible that fatigue caused by the brain injury makes headache more likely. Muscle weakness in one area could cause other muscles to compensate and fatigue more quickly, also causing pain.

Finding a doctor who is experienced with CM patients is important. Given that, we often think my son's CM/surgical path cause a certain symptom or issue, but the doctors can't attribute it to that. They at least acknowledge that it could be related, though.

Best wishes,

Michelle

18 year old son with brainstem CM resected in March 2010, CM at C2-C3,CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)

Thank you again for your time and consideration with providing some insight. We have tried multiple different head pain medications and I feel like my husband becomes extremely frustrated when we are even prescribed a migraine medication to control these extremely severe symptoms. I tried to advise him that although they are calling them migraine medications they could potentially work to help remedy the severity of his head pain unfortunately we have not yet found any that have worked. This is a vicious and rigorous cycle that I feel a lot of cavernous patients are unfortunately dealing with.

Unfortunately, lots of cm patients have headaches and head pain...seems to be most often the case and frequently the doctors say they are not related...pretty frustrating. Somehow, being validated that your complaints are real or reasonable makes it better. Anyways, I'm lucky, I don't have pain, but the pain is real for all of you that have it I'm sure...and I'm sorry. I hope you find something that helps. I've heard some people tried amytriptaline...or something like that with some relief. Good luck...I'm sorry.

Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com

Thank you so much for all the information you provided in the sanity check... This is very frustrating for patients with CCM and it's a vicious cycle. I appreciate the information on the medication as well and I really enjoyed reading your blog..

I think that is very helpful for patients with CCM and to understand what others have experienced patients